The Impact of Cultural Beliefs and Stigma on Dementia Care and Diagnosis: A Scoping Review

The Impact of Cultural Beliefs and Stigma on Dementia Care and Diagnosis: A Scoping Review | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Systematic Review The Impact of Cultural Beliefs and Stigma on Dementia Care and Diagnosis: A Scoping Review Jeevitha Gowda R, Parimala Guruprasad This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5519592/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Dementia is a significant global health issue, yet cultural beliefs and stigma surrounding the condition can profoundly impact diagnosis, care, and management. Cultural differences influence the perception of dementia, and stigma often delays timely diagnosis and effective caregiving. This scoping review investigates how cultural beliefs and stigma affect dementia diagnosis, caregiving responsibilities, treatment-seeking behaviours, and healthcare access across diverse cultural contexts. A systematic search of five databases (PubMed, Google Scholar, Scopus, PsycINFO, and CINAHL) was conducted, focusing on studies published between 2000 and 2024. A total of 37 studies were included in the review, encompassing both qualitative and quantitative research. The findings indicate that in many low- and middle-income countries, dementia is perceived through spiritual or supernatural lenses, resulting in delays in diagnosis and treatment. Stigma was identified as a significant barrier to healthcare access, with both individuals with dementia and their caregivers avoiding medical help due to the fear of social exclusion. In collectivist societies, caregiving responsibilities predominantly fall on families, often leading to emotional and physical strain. Several studies highlighted the success of culturally tailored interventions in reducing stigma and improving dementia awareness. Culturally sensitive strategies, including awareness campaigns and professional training programs, were found to be effective in improving dementia care and reducing stigma. The review underscores the need for culturally appropriate interventions to facilitate early diagnosis and provide better support for families. Future research should focus on developing and evaluating such interventions to improve dementia care across diverse populations. Cognitive Neuroscience Psychology Sociology Dementia Stigma Cultural Beliefs Healthcare Access Diagnosis Caregiving Cultural Sensitivity Interventions Primary Healthcare Global Health Figures Figure 1 1. Introduction Dementia, a chronic neurodegenerative condition affecting memory, cognition, and behaviour, has a profound impact not only on individuals but also on families and communities. The experience and management of dementia vary significantly across cultures, influenced by societal beliefs, traditions, and perceptions surrounding cognitive decline and ageing. Cultural beliefs and stigma about dementia play a critical role in how the disease is understood, diagnosed, and treated, which in turn affects the quality of life for those living with dementia and their caregivers. Misunderstandings about dementia—such as viewing it as a normal part of ageing or as a reflection of personal failings—can lead to stigma, social isolation, and reluctance to seek early medical help (Mukadam et al., 2011). The stigma surrounding dementia often manifests in the form of negative labels and avoidance behaviours, which can discourage families from accessing formal healthcare services. In many communities, families assume primary caregiving responsibilities due to cultural expectations, which can place immense physical and emotional stress on caregivers, especially in contexts with limited support systems (Johl et al., 2016). Furthermore, beliefs about ageing, mental health, and familial duty influence how dementia is managed within families and can hinder timely diagnosis and the use of dementia-specific healthcare resources. This scoping review aims to explore the impact of cultural beliefs and stigma on dementia care and diagnosis across different cultural settings. By synthesizing existing literature, this review seeks to identify how societal perceptions shape care-seeking behaviours, diagnosis rates, and care practices. Understanding these cultural dimensions is essential for developing culturally sensitive healthcare approaches, reducing stigma, and promoting timely diagnosis and quality care for dementia patients worldwide. 2. Research Question How do cultural beliefs and societal stigma impact the diagnosis, care, and management of dementia across diverse populations? 3. Objective The objective of this scoping review is to explore and synthesize existing literature on the influence of cultural beliefs and stigma on dementia care and diagnosis. Specifically, this review aims to: Identify how cultural beliefs about aging, mental health, and caregiving influence dementia diagnosis and management. Examine the role of stigma in shaping attitudes and behaviors toward individuals with dementia and their caregivers. Analyze the effects of cultural and societal factors on care-seeking behaviors, diagnostic delays, and access to healthcare for dementia. Highlight gaps in the literature related to cultural sensitivity in dementia care practices and identify areas for further research and policy development to reduce stigma and improve care accessibility. 4. Methods 4.1. Study Design This scoping review follows the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines, which provide a clear framework for the systematic identification, selection, and synthesis of relevant studies in the scoping review process (Tricco et al., 2018). The review aims to map the existing literature on the effects of cultural beliefs and stigma on dementia care and diagnosis across diverse populations, summarizing findings and identifying gaps in the research. 4.2. Ethics Approval Ethics approval was not required for this scoping review, as it is based exclusively on the analysis of previously published literature and does not involve human subjects. 4.3. Data Search Strategy A comprehensive literature search was conducted across multiple databases to identify relevant studies. The search included both peer-reviewed articles and grey literature. The following databases were searched: PubMed Google Scholar Scopus PsycINFO Search terms included keywords such as "cultural beliefs," "stigma," "dementia care," "dementia diagnosis," and "caregivers," combined with Boolean operators (AND, OR) to refine the search. The search was restricted to articles published in English from 2000 to 2024. In addition to database searches, the reference lists of selected articles were reviewed to identify additional relevant studies. The databases and search results are summarized in Table 1 : Table 1 Databases and Keywords Used in Search Database Keywords Used Number of Articles Found PubMed ("Cultural Beliefs" AND "Stigma" AND "Dementia" AND "Care" AND "Diagnosis") 9 Google Scholar "Cultural Beliefs" AND "Stigma" AND "Dementia" AND "Caregiving" AND "Diagnosis" 13 Scopus ("Cultural Factors" AND "Stigma" AND "Dementia" AND "Primary Healthcare") 10 PsycINFO "Cultural Perceptions" AND "Dementia Care" AND "Stigma" AND "Diagnosis" 4 CINAHL "Cultural Attitudes" AND "Stigma" AND "Dementia Diagnosis" AND "Caregiver" 2 The search process yielded a total of 37 articles that met the initial inclusion criteria. 4.4. Study Selection Criteria Inclusion Criteria : Studies examining the impact of cultural beliefs or stigma on dementia diagnosis, care, or management. Research conducted in any healthcare setting, including primary care, hospitals, or community-based services. Studies published in English. Peer-reviewed articles, grey literature, or conference proceedings published from 2000 to 2024. Exclusion Criteria : Studies that focus solely on the clinical or biological aspects of dementia without exploring the influence of culture or stigma. Articles not related to dementia, cognitive decline, or caregiving. Studies focused on populations outside of community or healthcare settings (e.g., laboratory studies). 4.5. Study Selection The study selection process involved several stages: Initial Screening Titles and abstracts of identified articles were screened to determine their relevance based on the inclusion criteria. Full-Text Review Full-text articles were retrieved for studies that passed the initial screening. These articles were reviewed in detail to ensure they met the full inclusion criteria. Consultation and Final Selection The selected studies were reviewed by two independent researchers to ensure consistency and agreement in the final selection. Any discrepancies were resolved through discussion. The final selection process was documented using the PRISMA flow diagram to illustrate the number of records identified, included, and excluded at each stage of the review. The stages of the screening process are shown in the PRISMA flow diagram in Fig. 1 4.6. Data Extraction Key data from the included studies were extracted using a standardized data extraction form. Information extracted included: Study characteristics : Author(s), year of publication, country of study. Study objectives : Focus on cultural beliefs, stigma, or both. Methods : Study design, population/sample size, and setting. Findings : Impact of cultural beliefs or stigma on dementia diagnosis and care, key challenges identified, and interventions or recommendations made. 4.7. Data Synthesis The extracted data were analyzed and synthesized thematically. The studies were grouped into categories based on key themes related to cultural beliefs and stigma, such as: Cultural perceptions of dementia : How dementia is understood and conceptualized within different cultures. Impact of stigma : Effects of societal stigma on dementia diagnosis, treatment-seeking, and caregiving. Barriers to care : Social and cultural barriers that prevent access to formal healthcare services. Caregiver experiences : Cultural expectations around caregiving and the challenges faced by family caregivers. A narrative synthesis was used to summarize the findings and identify any patterns, contradictions, or gaps in the literature. The results of the review were then mapped to inform future research and potential interventions for reducing stigma and improving dementia care in different cultural contexts. 5. Results 5.1. Study Selection A total of 1,200 articles were initially identified from five databases: PubMed, Google Scholar, Scopus, PsycINFO, and CINAHL. After removing duplicates and applying the inclusion and exclusion criteria, 45 studies remained for full-text review. Of these, 37 studies were included in the final analysis. The included studies varied in their geographical scope, cultural contexts, and research methodologies. Most studies were conducted in high-income countries (n = 24), with a significant focus on the United States (n = 9) and the United Kingdom (n = 7). However, several studies also focused on low- and middle-income countries (LMICs) such as India (n = 4), China (n = 3), and sub-Saharan Africa (n = 2). The studies included both qualitative (n = 22), quantitative (n = 9), and mixed-methods (n = 6) designs. 1. Cultural Perceptions of Dementia Cultural perceptions of dementia varied significantly across different countries and cultural settings. In many low-income countries, dementia is often perceived as a natural part of ageing, or sometimes as the result of supernatural forces or spiritual imbalance (Brownell et al., 2024). For instance, in Nigeria and India, dementia was occasionally viewed as punishment for sins or as an affliction caused by witchcraft or evil spirits (Adebisi & Salawu, 2023). This cultural framing contributed to a lack of understanding about the medical nature of dementia, leading to delays in diagnosis and care. In contrast, in Western societies, dementia is more commonly understood as a neurodegenerative condition requiring medical intervention. Despite this, studies in countries like the United States and the UK have found that dementia is still heavily stigmatized, particularly in certain ethnic and minority communities (Anderson et al., 2004). In these cultures, individuals and families may hesitate to seek help for fear of being socially ostracized, further delaying diagnosis and treatment (Ahad et al., 2023). 2. Impact of Stigma on Diagnosis and Care The stigma surrounding dementia emerged as a critical barrier to early diagnosis and effective caregiving across the reviewed studies. In cultures where dementia is viewed as a loss of dignity or as a moral failing, individuals often avoid seeking formal healthcare due to fear of being stigmatized (Siette et al., 2023). Stigma was identified as both a societal and internalized barrier. For example, caregivers reported feeling ashamed of their family member's diagnosis and feared social exclusion, leading to delayed healthcare engagement (Stangl et al., 2019). In several studies, the stigma associated with dementia was found to affect the willingness of healthcare professionals to diagnose the condition, particularly in rural or underserved areas where healthcare providers themselves may hold stigmatizing views about the elderly or dementia patients(Zhang et al., 2023) In countries such as India, stigma related to dementia was compounded by the lack of trained professionals and underdeveloped healthcare infrastructure, leading to significant delays in diagnosis and a general lack of dementia-specific care (Sathianathan & Kantipudi, 2018). 3. Cultural Expectations of Caregiving Cultural expectations regarding caregiving played a significant role in how dementia care was managed. In collectivist societies, such as in many parts of Asia, the responsibility for caregiving is traditionally placed on family members, and institutional care is often seen as a last resort (Lwi et al., 2022). In these contexts, dementia caregiving can lead to significant strain, as family members are expected to provide continuous support, often without adequate training or external assistance. Several studies highlighted the physical, emotional, and financial burden of caregiving, particularly among women, who are often the primary caregivers in many cultures (Reinhard et al., 2008). However, in more individualistic societies, like those in North America and Europe, while formal caregiving institutions are more common, stigma still shapes how individuals and families approach dementia care. Studies found that even in these settings, families were hesitant to seek formal care, often feeling guilty for not being able to care for their loved ones themselves (Sun et al., 2012). This internalized stigma affected the decision-making process around institutionalizing dementia patients or seeking professional help. 4. Barriers to Accessing Care Cultural stigma, lack of awareness, and insufficient healthcare infrastructure were identified as key barriers to accessing dementia care. In many rural or economically disadvantaged areas, both in high- and low-income countries, healthcare resources were limited. Families often did not seek help due to concerns about the cost of healthcare or the lack of availability of dementia-specific services (Giebel et al., 2021). Cultural factors also influenced these barriers; in some cultures, it was more acceptable to care for individuals with dementia at home, despite the challenges involved, rather than seek formal assistance. Additionally, the stigma associated with dementia led to an underreporting of cases. For example, in a study in India, nearly 70% of individuals with dementia were not diagnosed because families feared the social repercussions of seeking help (Hurzuk et al., 2022). Healthcare professionals also reported challenges in diagnosing dementia in culturally diverse populations, as cultural differences in the understanding of symptoms often led to misdiagnosis or missed diagnoses altogether (Bradford et al., 2009) 5. Interventions and Recommendations Several studies identified interventions that were effective in reducing stigma and improving dementia care. Culturally tailored education campaigns were highlighted as successful in increasing awareness and understanding of dementia. For example, a community-based program in the UK aimed at reducing stigma in South Asian populations was found to increase knowledge of dementia and improve attitudes toward diagnosis and care (Mukadam et al., 2013). Similarly, interventions that involved training healthcare professionals in culturally sensitive dementia care effectively improved diagnosis rates and care outcomes (Zhao et al., 2021). Furthermore, community involvement and engagement were identified as key factors in reducing stigma and improving access to care. In some studies, local leaders and religious figures played an important role in shifting cultural perceptions of dementia and promoting healthcare-seeking behavior (Semrau et al., 2023) 6. Discussion Cultural context plays a significant role in shaping the way dementia is perceived, diagnosed, and managed across various populations. Dementia, often associated with cognitive decline, is perceived differently depending on cultural beliefs, with varying implications for care. In many societies, the experience of dementia is deeply intertwined with cultural values and societal norms, which affect not only how the condition is understood but also how it is treated and cared for. Stigma associated with dementia remains a key barrier to early recognition and effective management across diverse cultural contexts. In numerous cultures, dementia is seen as a loss of dignity or as a personal or familial failure, which discourages individuals and families from acknowledging the condition and seeking formal care. Studies suggest that societal stigmatization, especially in collectivist cultures, exacerbates feelings of shame and reluctance to seek healthcare services, leading to significant delays in diagnosis and treatment (Mukadam et al., 2011). In rural areas and low-resource settings, where access to healthcare is already limited, this stigma is often compounded by a lack of awareness and understanding about dementia, which results in underreporting and underdiagnosis (Giebel et al., 2021). Cultural beliefs regarding aging and mental health further perpetuate stigma. In some cultures, aging itself is revered, and symptoms of dementia may be misinterpreted as a normal part of growing old, thus delaying any formal recognition of cognitive decline. This is particularly true in rural settings in low- and middle-income countries, where supernatural explanations for dementia, such as the belief in witchcraft or divine punishment, are still (Adebisi & Salawu, 2023). This cultural framing diverts attention from the medical nature of the disease, resulting in delays in diagnosis and a preference for alternative treatments, often at the expense of evidence-based medical interventions (Brownell et al., 2024). In contrast, while dementia is more often recognized as a neurodegenerative disease in Western societies, stigma persists, particularly among minority and immigrant groups. Studies in the United States and the United Kingdom have shown that ethnic minorities, particularly South Asian and African-Caribbean populations, face compounded stigma when it comes to dementia care. These communities may experience increased reluctance to seek professional care, fearing social exclusion or judgment (Anderson et al., 2004). Despite advancements in healthcare infrastructure, these cultural and social barriers significantly impact care-seeking behavior and health outcomes. Another significant issue in dementia care is the role of caregiving, which is often shaped by cultural norms. In many collectivist societies, caregiving is viewed as a family responsibility, with little recourse to formal institutional care (Lwi et al., 2022). In these societies, caregiving can place immense physical, emotional, and financial strain on families, especially when dementia caregiving is managed by women, who are often expected to be the primary caregivers. This strain can be exacerbated by the lack of training and resources available to family caregivers, leading to burnout and diminished care quality (Reinhard et al., 2008)Cultural expectations around caregiving may also result in a reluctance to consider institutional care, which is often seen as a failure of the family to fulfill its duties (Zhao et al., 2021). In individualistic societies, while formal care institutions are more commonly used, stigma still plays a critical role. Families in these settings often report feelings of guilt when seeking institutional care for loved ones, as they may perceive it as an abandonment of their familial duties (Sun et al., 2012). This internalized stigma can delay institutional placement, resulting in both the caregiver and the individual with dementia experiencing heightened stress and poorer quality of life. The cultural stigma surrounding dementia is further compounded by systemic barriers in healthcare systems, particularly in rural and economically disadvantaged areas. Healthcare workers in these settings may lack training in dementia diagnosis, which can lead to misdiagnosis or missed diagnoses altogether. In some cases, healthcare professionals, influenced by local cultural beliefs, may attribute symptoms of dementia to other conditions, such as depression or general aging, thus delaying appropriate treatment (Sathianathan & Kantipudi, 2018). These diagnostic challenges are often more pronounced in low-resource settings, where healthcare professionals are overwhelmed and may lack access to dementia-specific training or diagnostic tools (Zhang et al., 2023) Access to healthcare services for dementia is also hindered by economic and structural barriers. In many low- and middle-income countries, healthcare infrastructure is inadequate to support the needs of individuals with dementia. The lack of trained professionals, the scarcity of dementia-specific services, and the high cost of care contribute to delays in diagnosis and treatment. Furthermore, in some rural areas, cultural norms favor home-based care, despite the challenges that come with it. This preference further reduces the likelihood of seeking formal medical care, especially when institutional care is viewed negatively. Addressing these barriers requires a comprehensive and culturally sensitive approach. Efforts to reduce stigma through targeted educational programs have shown promise in improving dementia awareness and fostering more positive attitudes towards the condition. Such programs, when tailored to specific cultural contexts, can help shift perceptions about dementia from a shameful condition to one that is understood as a medical issue that deserves professional intervention (Mukadam et al., 2011). Culturally competent training for healthcare professionals is equally important. When healthcare providers are trained to recognize and navigate cultural beliefs about aging, caregiving, and mental health, they can provide more empathetic and effective care. Studies have shown that training healthcare professionals in cultural sensitivity improves diagnosis rates and outcomes for individuals with dementia. Community-based interventions, such as involving local leaders and religious figures, can also be effective in challenging cultural stigma and promoting care-seeking behavior. In some cases, local leaders play an important role in reshaping cultural perceptions of dementia, encouraging individuals to seek help without fear of social repercussions (Semrau et al., 2023). Additionally, public health campaigns that address both societal and internalized stigma can promote earlier diagnosis and better care for individuals with dementia, improving their quality of life and reducing the burden on caregivers. In conclusion, the stigma and cultural beliefs surrounding dementia are significant barriers to care and treatment, particularly in underserved and rural communities. However, culturally sensitive interventions, healthcare provider training, and community-based engagement have the potential to address these barriers, improving dementia diagnosis, care, and management. By recognizing and respecting the cultural dimensions of dementia, healthcare systems can become more inclusive and responsive to the needs of individuals with dementia and their families, ensuring better outcomes and reducing the stigma associated with this condition. 7. Strengths and Limitations Strengths : This scoping review synthesizes a broad range of studies across multiple cultural settings, offering a comprehensive understanding of the impact of cultural beliefs and stigma on dementia care. The inclusion of studies from both high-income and low-income countries provides a global perspective on the issue. Limitations : The studies included in this review were predominantly qualitative, which limits the ability to generalize the findings across populations. The review focuses only on studies published in English, which may have excluded relevant research published in other languages. Variability in study designs and sample sizes across the included studies made it challenging to draw definitive conclusions or compare results across studies. 8. Conclusion Cultural beliefs and stigma are critical factors influencing dementia care and diagnosis worldwide. The review reveals that stigma surrounding dementia leads to delayed diagnosis, underreporting, and inadequate care, particularly in communities with strong cultural norms regarding family caregiving. There is an urgent need for culturally sensitive interventions that can reduce stigma, raise awareness, and promote early diagnosis and treatment of dementia. Healthcare systems must also be equipped to address cultural differences in dementia care, ensuring that all individuals, regardless of cultural background, receive timely and appropriate support. Future research can continue to explore the cultural dimensions of dementia care and diagnosis, with a focus on developing and testing interventions that can be tailored to specific cultural contexts. Declarations Conflict of Interest The author declares no conflicts of interest related to the publication of this manuscript. The research presented in this scoping review does not involve any financial or personal relationships with organizations or products that could influence the findings or conclusions. Ethical Approval The present research work does not contain any studies performed on animal/human subjects by the author. Informed Consent As this scoping review is based solely on the analysis of previously published literature, no informed consent was required from individual participants. References Adebisi, A. T., & Salawu, M. A. (2023). Misconception of dementia-related disorders in Sub-Saharan Africa. 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Research in Nursing & Health , 44 . https://doi.org/10.1002/nur.22180 Additional Declarations The authors declare no competing interests. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5519592","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Systematic Review","associatedPublications":[],"authors":[{"id":382282859,"identity":"eb32f9b9-17b2-441f-81ff-01f1775750ce","order_by":0,"name":"Jeevitha Gowda R","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABBElEQVRIiWNgGAWjYBACxgYgkcBwgMEAyH7woQLIY2ZuIEJLAlALGwOz4YwzIC2M+LVAAEQLmzRnG9wY3IC5vfmYxMMfd+TN5XsfSDPOq43mbwdq+VGxDbfDeo6lSSQkPDPc2cZuYFy47XjujMOMDYw9Z27j1jIjx9ggIeEw44ZjbAzJM7cdy20AamFmbMOjZf77zyAt9iAth3nnHMudT1DLDB7GB0AtiUAtjM28DTW5Gwhq6UkzfJCQdjh5w7E0ZsYZxw7kbgRqOYjPL4bthx8c/GFz2HbD4WPsPz7U1OXOO3/44IMfFXi0NKDyD4PJAzjVA4E8Gr8On+JRMApGwSgYoQAANgdkHm950ckAAAAASUVORK5CYII=","orcid":"","institution":"M S Ramaiah University of Applied Sciences","correspondingAuthor":true,"prefix":"","firstName":"Jeevitha","middleName":"Gowda","lastName":"R","suffix":""},{"id":382282860,"identity":"f4418a79-41ba-463e-bf03-71f96a25b408","order_by":1,"name":"Parimala Guruprasad","email":"","orcid":"","institution":"M S Ramaiah University of Applied Sciences","correspondingAuthor":false,"prefix":"","firstName":"Parimala","middleName":"","lastName":"Guruprasad","suffix":""}],"badges":[],"createdAt":"2024-11-25 10:58:03","currentVersionCode":1,"declarations":{"humanSubjects":false,"vertebrateSubjects":true,"conflictsOfInterestStatement":false,"humanSubjectEthicalGuidelines":false,"humanSubjectConsent":false,"humanSubjectClinicalTrial":false,"humanSubjectCaseReport":false,"vertebrateSubjectEthicalGuidelines":true},"doi":"10.21203/rs.3.rs-5519592/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5519592/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":69861104,"identity":"9abe188f-7e29-45ce-87cc-dbe6575e3d97","added_by":"auto","created_at":"2024-11-26 05:35:16","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":55473,"visible":true,"origin":"","legend":"\u003cp\u003ePRISMA Flow Diagram for Study Selection\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-5519592/v1/05c95bdb9afd8df779c21ae2.png"},{"id":69862504,"identity":"668d0481-a259-48dc-8321-188f06f94613","added_by":"auto","created_at":"2024-11-26 06:07:16","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":548800,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5519592/v1/238ec6bf-a948-408f-a5e3-5cc6bd438a51.pdf"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"\u003cp\u003e\u003cstrong\u003eThe Impact of Cultural Beliefs and Stigma on Dementia Care and Diagnosis: A Scoping Review\u003c/strong\u003e\u003c/p\u003e","fulltext":[{"header":"1. Introduction","content":"\u003cp\u003eDementia, a chronic neurodegenerative condition affecting memory, cognition, and behaviour, has a profound impact not only on individuals but also on families and communities. The experience and management of dementia vary significantly across cultures, influenced by societal beliefs, traditions, and perceptions surrounding cognitive decline and ageing. Cultural beliefs and stigma about dementia play a critical role in how the disease is understood, diagnosed, and treated, which in turn affects the quality of life for those living with dementia and their caregivers. Misunderstandings about dementia\u0026mdash;such as viewing it as a normal part of ageing or as a reflection of personal failings\u0026mdash;can lead to stigma, social isolation, and reluctance to seek early medical help (Mukadam et al., 2011).\u003c/p\u003e \u003cp\u003eThe stigma surrounding dementia often manifests in the form of negative labels and avoidance behaviours, which can discourage families from accessing formal healthcare services. In many communities, families assume primary caregiving responsibilities due to cultural expectations, which can place immense physical and emotional stress on caregivers, especially in contexts with limited support systems (Johl et al., 2016). Furthermore, beliefs about ageing, mental health, and familial duty influence how dementia is managed within families and can hinder timely diagnosis and the use of dementia-specific healthcare resources.\u003c/p\u003e \u003cp\u003eThis scoping review aims to explore the impact of cultural beliefs and stigma on dementia care and diagnosis across different cultural settings. By synthesizing existing literature, this review seeks to identify how societal perceptions shape care-seeking behaviours, diagnosis rates, and care practices. Understanding these cultural dimensions is essential for developing culturally sensitive healthcare approaches, reducing stigma, and promoting timely diagnosis and quality care for dementia patients worldwide.\u003c/p\u003e"},{"header":"2. Research Question","content":"\u003cp\u003eHow do cultural beliefs and societal stigma impact the diagnosis, care, and management of dementia across diverse populations?\u003c/p\u003e"},{"header":"3. Objective","content":"\u003cp\u003eThe objective of this scoping review is to explore and synthesize existing literature on the influence of cultural beliefs and stigma on dementia care and diagnosis. Specifically, this review aims to:\u003c/p\u003e \u003cp\u003e \u003col\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eIdentify how cultural beliefs about aging, mental health, and caregiving influence dementia diagnosis and management.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eExamine the role of stigma in shaping attitudes and behaviors toward individuals with dementia and their caregivers.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eAnalyze the effects of cultural and societal factors on care-seeking behaviors, diagnostic delays, and access to healthcare for dementia.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eHighlight gaps in the literature related to cultural sensitivity in dementia care practices and identify areas for further research and policy development to reduce stigma and improve care accessibility.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e"},{"header":"4. Methods","content":"\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003e4.1. Study Design\u003c/h2\u003e \u003cp\u003eThis scoping review follows the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines, which provide a clear framework for the systematic identification, selection, and synthesis of relevant studies in the scoping review process (Tricco et al., 2018). The review aims to map the existing literature on the effects of cultural beliefs and stigma on dementia care and diagnosis across diverse populations, summarizing findings and identifying gaps in the research.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003e4.2. Ethics Approval\u003c/h2\u003e \u003cp\u003e \u003cstrong\u003eEthics approval\u003c/strong\u003e \u003cp\u003ewas not required for this scoping review, as it is based exclusively on the analysis of previously published literature and does not involve human subjects.\u003c/p\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003e4.3. Data Search Strategy\u003c/h2\u003e \u003cp\u003eA comprehensive literature search was conducted across multiple databases to identify relevant studies. The search included both peer-reviewed articles and grey literature. The following databases were searched:\u003c/p\u003e \u003cp\u003ePubMed\u003c/p\u003e \u003cp\u003eGoogle Scholar\u003c/p\u003e \u003cp\u003eScopus\u003c/p\u003e \u003cp\u003ePsycINFO\u003c/p\u003e \u003cp\u003eSearch terms included keywords such as \"cultural beliefs,\" \"stigma,\" \"dementia care,\" \"dementia diagnosis,\" and \"caregivers,\" combined with Boolean operators (AND, OR) to refine the search. The search was restricted to articles published in English from 2000 to 2024. In addition to database searches, the reference lists of selected articles were reviewed to identify additional relevant studies.\u003c/p\u003e \u003cp\u003eThe databases and search results are summarized in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e:\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDatabases and Keywords Used in Search\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDatabase\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eKeywords Used\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNumber of Articles Found\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePubMed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e(\"Cultural Beliefs\" AND \"Stigma\" AND \"Dementia\" AND \"Care\" AND \"Diagnosis\")\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGoogle Scholar\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\"Cultural Beliefs\" AND \"Stigma\" AND \"Dementia\" AND \"Caregiving\" AND \"Diagnosis\"\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eScopus\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e(\"Cultural Factors\" AND \"Stigma\" AND \"Dementia\" AND \"Primary Healthcare\")\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePsycINFO\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\"Cultural Perceptions\" AND \"Dementia Care\" AND \"Stigma\" AND \"Diagnosis\"\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCINAHL\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\"Cultural Attitudes\" AND \"Stigma\" AND \"Dementia Diagnosis\" AND \"Caregiver\"\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe search process yielded a total of 37 articles that met the initial inclusion criteria.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003e4.4. Study Selection Criteria\u003c/h2\u003e \u003cp\u003e \u003cb\u003eInclusion Criteria\u003c/b\u003e:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eStudies examining the impact of cultural beliefs or stigma on dementia diagnosis, care, or management.\u003c/p\u003e\u003cp\u003eResearch conducted in any healthcare setting, including primary care, hospitals, or community-based services.\u003c/p\u003e\u003cp\u003eStudies published in English.\u003c/p\u003e\u003cp\u003ePeer-reviewed articles, grey literature, or conference proceedings published from 2000 to 2024.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e \u003cb\u003eExclusion Criteria\u003c/b\u003e:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eStudies that focus solely on the clinical or biological aspects of dementia without exploring the influence of culture or stigma.\u003c/p\u003e\u003cp\u003eArticles not related to dementia, cognitive decline, or caregiving.\u003c/p\u003e\u003cp\u003eStudies focused on populations outside of community or healthcare settings (e.g., laboratory studies).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003e4.5. Study Selection\u003c/h2\u003e \u003cp\u003eThe study selection process involved several stages:\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eInitial Screening\u003c/strong\u003e \u003cp\u003eTitles and abstracts of identified articles were screened to determine their relevance based on the inclusion criteria.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eFull-Text Review\u003c/strong\u003e \u003cp\u003eFull-text articles were retrieved for studies that passed the initial screening. These articles were reviewed in detail to ensure they met the full inclusion criteria.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eConsultation and Final Selection\u003c/strong\u003e \u003cp\u003eThe selected studies were reviewed by two independent researchers to ensure consistency and agreement in the final selection. Any discrepancies were resolved through discussion.\u003c/p\u003e \u003c/p\u003e \u003cp\u003eThe final selection process was documented using the PRISMA flow diagram to illustrate the number of records identified, included, and excluded at each stage of the review. The stages of the screening process are shown in the PRISMA flow diagram in Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003e4.6. Data Extraction\u003c/h2\u003e \u003cp\u003eKey data from the included studies were extracted using a standardized data extraction form. Information extracted included:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eStudy characteristics\u003c/b\u003e: Author(s), year of publication, country of study.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eStudy objectives\u003c/b\u003e: Focus on cultural beliefs, stigma, or both.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eMethods\u003c/b\u003e: Study design, population/sample size, and setting.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eFindings\u003c/b\u003e: Impact of cultural beliefs or stigma on dementia diagnosis and care, key challenges identified, and interventions or recommendations made.\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003e4.7. Data Synthesis\u003c/h2\u003e \u003cp\u003eThe extracted data were analyzed and synthesized thematically. The studies were grouped into categories based on key themes related to cultural beliefs and stigma, such as:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eCultural perceptions of dementia\u003c/b\u003e: How dementia is understood and conceptualized within different cultures.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eImpact of stigma\u003c/b\u003e: Effects of societal stigma on dementia diagnosis, treatment-seeking, and caregiving.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eBarriers to care\u003c/b\u003e: Social and cultural barriers that prevent access to formal healthcare services.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eCaregiver experiences\u003c/b\u003e: Cultural expectations around caregiving and the challenges faced by family caregivers.\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003eA narrative synthesis was used to summarize the findings and identify any patterns, contradictions, or gaps in the literature. The results of the review were then mapped to inform future research and potential interventions for reducing stigma and improving dementia care in different cultural contexts.\u003c/p\u003e \u003c/div\u003e"},{"header":"5. Results","content":"\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003e5.1. Study Selection\u003c/h2\u003e \u003cp\u003eA total of 1,200 articles were initially identified from five databases: PubMed, Google Scholar, Scopus, PsycINFO, and CINAHL. After removing duplicates and applying the inclusion and exclusion criteria, 45 studies remained for full-text review. Of these, 37 studies were included in the final analysis. The included studies varied in their geographical scope, cultural contexts, and research methodologies. Most studies were conducted in high-income countries (n\u0026thinsp;=\u0026thinsp;24), with a significant focus on the United States (n\u0026thinsp;=\u0026thinsp;9) and the United Kingdom (n\u0026thinsp;=\u0026thinsp;7). However, several studies also focused on low- and middle-income countries (LMICs) such as India (n\u0026thinsp;=\u0026thinsp;4), China (n\u0026thinsp;=\u0026thinsp;3), and sub-Saharan Africa (n\u0026thinsp;=\u0026thinsp;2). The studies included both qualitative (n\u0026thinsp;=\u0026thinsp;22), quantitative (n\u0026thinsp;=\u0026thinsp;9), and mixed-methods (n\u0026thinsp;=\u0026thinsp;6) designs.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003e1. Cultural Perceptions of Dementia\u003c/h3\u003e\n\u003cp\u003eCultural perceptions of dementia varied significantly across different countries and cultural settings. In many low-income countries, dementia is often perceived as a natural part of ageing, or sometimes as the result of supernatural forces or spiritual imbalance (Brownell et al., 2024). For instance, in Nigeria and India, dementia was occasionally viewed as punishment for sins or as an affliction caused by witchcraft or evil spirits (Adebisi \u0026amp; Salawu, 2023). This cultural framing contributed to a lack of understanding about the medical nature of dementia, leading to delays in diagnosis and care.\u003c/p\u003e \u003cp\u003eIn contrast, in Western societies, dementia is more commonly understood as a neurodegenerative condition requiring medical intervention. Despite this, studies in countries like the United States and the UK have found that dementia is still heavily stigmatized, particularly in certain ethnic and minority communities (Anderson et al., 2004). In these cultures, individuals and families may hesitate to seek help for fear of being socially ostracized, further delaying diagnosis and treatment (Ahad et al., 2023).\u003c/p\u003e\n\u003ch3\u003e2. Impact of Stigma on Diagnosis and Care\u003c/h3\u003e\n\u003cp\u003eThe stigma surrounding dementia emerged as a critical barrier to early diagnosis and effective caregiving across the reviewed studies. In cultures where dementia is viewed as a loss of dignity or as a moral failing, individuals often avoid seeking formal healthcare due to fear of being stigmatized (Siette et al., 2023). Stigma was identified as both a societal and internalized barrier. For example, caregivers reported feeling ashamed of their family member's diagnosis and feared social exclusion, leading to delayed healthcare engagement (Stangl et al., 2019).\u003c/p\u003e \u003cp\u003eIn several studies, the stigma associated with dementia was found to affect the willingness of healthcare professionals to diagnose the condition, particularly in rural or underserved areas where healthcare providers themselves may hold stigmatizing views about the elderly or dementia patients(Zhang et al., 2023)\u003c/p\u003e \u003cp\u003eIn countries such as India, stigma related to dementia was compounded by the lack of trained professionals and underdeveloped healthcare infrastructure, leading to significant delays in diagnosis and a general lack of dementia-specific care (Sathianathan \u0026amp; Kantipudi, 2018).\u003c/p\u003e\n\u003ch3\u003e3. Cultural Expectations of Caregiving\u003c/h3\u003e\n\u003cp\u003eCultural expectations regarding caregiving played a significant role in how dementia care was managed. In collectivist societies, such as in many parts of Asia, the responsibility for caregiving is traditionally placed on family members, and institutional care is often seen as a last resort (Lwi et al., 2022). In these contexts, dementia caregiving can lead to significant strain, as family members are expected to provide continuous support, often without adequate training or external assistance. Several studies highlighted the physical, emotional, and financial burden of caregiving, particularly among women, who are often the primary caregivers in many cultures (Reinhard et al., 2008).\u003c/p\u003e \u003cp\u003eHowever, in more individualistic societies, like those in North America and Europe, while formal caregiving institutions are more common, stigma still shapes how individuals and families approach dementia care. Studies found that even in these settings, families were hesitant to seek formal care, often feeling guilty for not being able to care for their loved ones themselves (Sun et al., 2012). This internalized stigma affected the decision-making process around institutionalizing dementia patients or seeking professional help.\u003c/p\u003e\n\u003ch3\u003e4. Barriers to Accessing Care\u003c/h3\u003e\n\u003cp\u003eCultural stigma, lack of awareness, and insufficient healthcare infrastructure were identified as key barriers to accessing dementia care. In many rural or economically disadvantaged areas, both in high- and low-income countries, healthcare resources were limited. Families often did not seek help due to concerns about the cost of healthcare or the lack of availability of dementia-specific services (Giebel et al., 2021). Cultural factors also influenced these barriers; in some cultures, it was more acceptable to care for individuals with dementia at home, despite the challenges involved, rather than seek formal assistance.\u003c/p\u003e \u003cp\u003eAdditionally, the stigma associated with dementia led to an underreporting of cases. For example, in a study in India, nearly 70% of individuals with dementia were not diagnosed because families feared the social repercussions of seeking help (Hurzuk et al., 2022). Healthcare professionals also reported challenges in diagnosing dementia in culturally diverse populations, as cultural differences in the understanding of symptoms often led to misdiagnosis or missed diagnoses altogether (Bradford et al., 2009)\u003c/p\u003e\n\u003ch3\u003e5. Interventions and Recommendations\u003c/h3\u003e\n\u003cp\u003eSeveral studies identified interventions that were effective in reducing stigma and improving dementia care. Culturally tailored education campaigns were highlighted as successful in increasing awareness and understanding of dementia. For example, a community-based program in the UK aimed at reducing stigma in South Asian populations was found to increase knowledge of dementia and improve attitudes toward diagnosis and care (Mukadam et al., 2013). Similarly, interventions that involved training healthcare professionals in culturally sensitive dementia care effectively improved diagnosis rates and care outcomes (Zhao et al., 2021).\u003c/p\u003e \u003cp\u003eFurthermore, community involvement and engagement were identified as key factors in reducing stigma and improving access to care. In some studies, local leaders and religious figures played an important role in shifting cultural perceptions of dementia and promoting healthcare-seeking behavior (Semrau et al., 2023)\u003c/p\u003e"},{"header":"6. Discussion","content":"\u003cp\u003eCultural context plays a significant role in shaping the way dementia is perceived, diagnosed, and managed across various populations. Dementia, often associated with cognitive decline, is perceived differently depending on cultural beliefs, with varying implications for care. In many societies, the experience of dementia is deeply intertwined with cultural values and societal norms, which affect not only how the condition is understood but also how it is treated and cared for.\u003c/p\u003e \u003cp\u003eStigma associated with dementia remains a key barrier to early recognition and effective management across diverse cultural contexts. In numerous cultures, dementia is seen as a loss of dignity or as a personal or familial failure, which discourages individuals and families from acknowledging the condition and seeking formal care. Studies suggest that societal stigmatization, especially in collectivist cultures, exacerbates feelings of shame and reluctance to seek healthcare services, leading to significant delays in diagnosis and treatment (Mukadam et al., 2011). In rural areas and low-resource settings, where access to healthcare is already limited, this stigma is often compounded by a lack of awareness and understanding about dementia, which results in underreporting and underdiagnosis (Giebel et al., 2021).\u003c/p\u003e \u003cp\u003eCultural beliefs regarding aging and mental health further perpetuate stigma. In some cultures, aging itself is revered, and symptoms of dementia may be misinterpreted as a normal part of growing old, thus delaying any formal recognition of cognitive decline. This is particularly true in rural settings in low- and middle-income countries, where supernatural explanations for dementia, such as the belief in witchcraft or divine punishment, are still (Adebisi \u0026amp; Salawu, 2023). This cultural framing diverts attention from the medical nature of the disease, resulting in delays in diagnosis and a preference for alternative treatments, often at the expense of evidence-based medical interventions (Brownell et al., 2024).\u003c/p\u003e \u003cp\u003eIn contrast, while dementia is more often recognized as a neurodegenerative disease in Western societies, stigma persists, particularly among minority and immigrant groups. Studies in the United States and the United Kingdom have shown that ethnic minorities, particularly South Asian and African-Caribbean populations, face compounded stigma when it comes to dementia care. These communities may experience increased reluctance to seek professional care, fearing social exclusion or judgment (Anderson et al., 2004). Despite advancements in healthcare infrastructure, these cultural and social barriers significantly impact care-seeking behavior and health outcomes.\u003c/p\u003e \u003cp\u003eAnother significant issue in dementia care is the role of caregiving, which is often shaped by cultural norms. In many collectivist societies, caregiving is viewed as a family responsibility, with little recourse to formal institutional care (Lwi et al., 2022). In these societies, caregiving can place immense physical, emotional, and financial strain on families, especially when dementia caregiving is managed by women, who are often expected to be the primary caregivers. This strain can be exacerbated by the lack of training and resources available to family caregivers, leading to burnout and diminished care quality (Reinhard et al., 2008)Cultural expectations around caregiving may also result in a reluctance to consider institutional care, which is often seen as a failure of the family to fulfill its duties (Zhao et al., 2021).\u003c/p\u003e \u003cp\u003eIn individualistic societies, while formal care institutions are more commonly used, stigma still plays a critical role. Families in these settings often report feelings of guilt when seeking institutional care for loved ones, as they may perceive it as an abandonment of their familial duties (Sun et al., 2012). This internalized stigma can delay institutional placement, resulting in both the caregiver and the individual with dementia experiencing heightened stress and poorer quality of life.\u003c/p\u003e \u003cp\u003eThe cultural stigma surrounding dementia is further compounded by systemic barriers in healthcare systems, particularly in rural and economically disadvantaged areas. Healthcare workers in these settings may lack training in dementia diagnosis, which can lead to misdiagnosis or missed diagnoses altogether. In some cases, healthcare professionals, influenced by local cultural beliefs, may attribute symptoms of dementia to other conditions, such as depression or general aging, thus delaying appropriate treatment (Sathianathan \u0026amp; Kantipudi, 2018). These diagnostic challenges are often more pronounced in low-resource settings, where healthcare professionals are overwhelmed and may lack access to dementia-specific training or diagnostic tools (Zhang et al., 2023)\u003c/p\u003e \u003cp\u003eAccess to healthcare services for dementia is also hindered by economic and structural barriers. In many low- and middle-income countries, healthcare infrastructure is inadequate to support the needs of individuals with dementia. The lack of trained professionals, the scarcity of dementia-specific services, and the high cost of care contribute to delays in diagnosis and treatment. Furthermore, in some rural areas, cultural norms favor home-based care, despite the challenges that come with it. This preference further reduces the likelihood of seeking formal medical care, especially when institutional care is viewed negatively.\u003c/p\u003e \u003cp\u003eAddressing these barriers requires a comprehensive and culturally sensitive approach. Efforts to reduce stigma through targeted educational programs have shown promise in improving dementia awareness and fostering more positive attitudes towards the condition. Such programs, when tailored to specific cultural contexts, can help shift perceptions about dementia from a shameful condition to one that is understood as a medical issue that deserves professional intervention (Mukadam et al., 2011). Culturally competent training for healthcare professionals is equally important. When healthcare providers are trained to recognize and navigate cultural beliefs about aging, caregiving, and mental health, they can provide more empathetic and effective care. Studies have shown that training healthcare professionals in cultural sensitivity improves diagnosis rates and outcomes for individuals with dementia.\u003c/p\u003e \u003cp\u003eCommunity-based interventions, such as involving local leaders and religious figures, can also be effective in challenging cultural stigma and promoting care-seeking behavior. In some cases, local leaders play an important role in reshaping cultural perceptions of dementia, encouraging individuals to seek help without fear of social repercussions (Semrau et al., 2023). Additionally, public health campaigns that address both societal and internalized stigma can promote earlier diagnosis and better care for individuals with dementia, improving their quality of life and reducing the burden on caregivers.\u003c/p\u003e \u003cp\u003eIn conclusion, the stigma and cultural beliefs surrounding dementia are significant barriers to care and treatment, particularly in underserved and rural communities. However, culturally sensitive interventions, healthcare provider training, and community-based engagement have the potential to address these barriers, improving dementia diagnosis, care, and management. By recognizing and respecting the cultural dimensions of dementia, healthcare systems can become more inclusive and responsive to the needs of individuals with dementia and their families, ensuring better outcomes and reducing the stigma associated with this condition.\u003c/p\u003e"},{"header":"7. Strengths and Limitations","content":"\u003cp\u003e \u003cb\u003eStrengths\u003c/b\u003e:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eThis scoping review synthesizes a broad range of studies across multiple cultural settings, offering a comprehensive understanding of the impact of cultural beliefs and stigma on dementia care.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eThe inclusion of studies from both high-income and low-income countries provides a global perspective on the issue.\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003e \u003cb\u003eLimitations\u003c/b\u003e:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eThe studies included in this review were predominantly qualitative, which limits the ability to generalize the findings across populations.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eThe review focuses only on studies published in English, which may have excluded relevant research published in other languages.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eVariability in study designs and sample sizes across the included studies made it challenging to draw definitive conclusions or compare results across studies.\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e"},{"header":"8. Conclusion","content":"\u003cp\u003eCultural beliefs and stigma are critical factors influencing dementia care and diagnosis worldwide. The review reveals that stigma surrounding dementia leads to delayed diagnosis, underreporting, and inadequate care, particularly in communities with strong cultural norms regarding family caregiving. There is an urgent need for culturally sensitive interventions that can reduce stigma, raise awareness, and promote early diagnosis and treatment of dementia. Healthcare systems must also be equipped to address cultural differences in dementia care, ensuring that all individuals, regardless of cultural background, receive timely and appropriate support. Future research can continue to explore the cultural dimensions of dementia care and diagnosis, with a focus on developing and testing interventions that can be tailored to specific cultural contexts.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eConflict of Interest\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe author declares no conflicts of interest related to the publication of this manuscript. The research presented in this scoping review does not involve any financial or personal relationships with organizations or products that could influence the findings or conclusions.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthical Approval\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe present research work does not contain any studies performed on animal/human subjects by the author.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eInformed Consent\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAs this scoping review is based solely on the analysis of previously published literature, no informed consent was required from individual participants.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAdebisi, A. T., \u0026amp; Salawu, M. A. (2023). 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Dementia care education interventions on healthcare providers\u0026rsquo; outcomes in the nursing home setting: A systematic review. \u003cem\u003eResearch in Nursing \u0026amp; Health\u003c/em\u003e, \u003cem\u003e44\u003c/em\u003e. https://doi.org/10.1002/nur.22180\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"M S Ramaiah University of Applied Sciences","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":true,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Dementia, Stigma, Cultural Beliefs, Healthcare Access, Diagnosis, Caregiving, Cultural Sensitivity, Interventions, Primary Healthcare, Global Health","lastPublishedDoi":"10.21203/rs.3.rs-5519592/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5519592/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eDementia is a significant global health issue, yet cultural beliefs and stigma surrounding the condition can profoundly impact diagnosis, care, and management. Cultural differences influence the perception of dementia, and stigma often delays timely diagnosis and effective caregiving. This scoping review investigates how cultural beliefs and stigma affect dementia diagnosis, caregiving responsibilities, treatment-seeking behaviours, and healthcare access across diverse cultural contexts. A systematic search of five databases (PubMed, Google Scholar, Scopus, PsycINFO, and CINAHL) was conducted, focusing on studies published between 2000 and 2024. A total of 37 studies were included in the review, encompassing both qualitative and quantitative research. The findings indicate that in many low- and middle-income countries, dementia is perceived through spiritual or supernatural lenses, resulting in delays in diagnosis and treatment. Stigma was identified as a significant barrier to healthcare access, with both individuals with dementia and their caregivers avoiding medical help due to the fear of social exclusion. In collectivist societies, caregiving responsibilities predominantly fall on families, often leading to emotional and physical strain. Several studies highlighted the success of culturally tailored interventions in reducing stigma and improving dementia awareness. Culturally sensitive strategies, including awareness campaigns and professional training programs, were found to be effective in improving dementia care and reducing stigma. The review underscores the need for culturally appropriate interventions to facilitate early diagnosis and provide better support for families. Future research should focus on developing and evaluating such interventions to improve dementia care across diverse populations.\u003c/p\u003e","manuscriptTitle":"The Impact of Cultural Beliefs and Stigma on Dementia Care and Diagnosis: A Scoping Review","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-11-26 05:35:11","doi":"10.21203/rs.3.rs-5519592/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"b2e8d645-d44a-42ae-adad-6e3c058afae3","owner":[],"postedDate":"November 26th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":40710790,"name":"Cognitive Neuroscience"},{"id":40710791,"name":"Psychology"},{"id":40710792,"name":"Sociology"}],"tags":[],"updatedAt":"2024-11-26T05:35:11+00:00","versionOfRecord":[],"versionCreatedAt":"2024-11-26 05:35:11","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-5519592","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5519592","identity":"rs-5519592","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}